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Our Research Framework – Aphasia Institute

How research and development fits into our synergy of service

Research and Development: The solutions we develop, evaluate and share in relation to the challenge of living with aphasia are grounded in what we learn from the lived experience of our clients with aphasia and their families. We pursue our own research initiatives and consult with others as well as support external research projects. In addition to contributing more widely to the field of aphasia, research results help us to evaluate and improve our own programs. The Aphasia Institute is committed to using evidence both in our direct service work and organizational decision-making.

Our research is guided by the values of the Life Participation Approach to Aphasia (LPAA) and the Living with Aphasia: Framework for Outcome Measurement (A-FROM)


ABOUT LPAA

The core values of the Life Participation Approach to Aphasia (LPAA) (Chapey et al., 2000)[1] include:

  • The explicit goal is enhancement of life participation
  • Everyone affected by aphasia is entitled to service
  • Success measures include documented life enhancement changes
  • Both personal and environmental factors are intervention targets
  • Emphasis is on availability of services as needed at all stages of aphasia

At the center of the LPAA is the premise that the concerns of the person affected by aphasia should be central to the intervention and that these individuals should be empowered to be full participants in all aspects of their recovery (Cohen-Schneider et al., 2020)[2].

The Life Participation Approach to Aphasia Project Group was comprised of a group of clinicians and researchers who had similar views regarding the importance of re-engagement in life. The statement of values were not meant to be prescriptive, but rather to provide ideas for discussion. This is a link to the original article published in the ASHA Leader in 2000. The statement of values was reprinted in Language Intervention Strategies in Aphasia and Related Neurogenic Communication Disorders (Chapey, R. (Ed.). (2008) Baltimore, MD: Lippincott Williams & Wilkins.).

Related References:

LPAA Project Group (Chapey, R., Duchan, J. F., Elman, R. J., Garcia, L. J., Kagan, A., Lyon, J., & Simmons Mackie, N.). (2000). Life participation approach to aphasia: A statement of values for the future. ASHA Leader, 5(3), 4-6. Retrieved February 16, 2021 from https://leader.pubs.asha.org/doi/10.1044/leader.FTR.05032000.4 (Reprinted in Chapey, R. (Ed.). (2001). Language intervention strategies in aphasia and related neurogenic communication disorders. Baltimore, MD: Lippincott Williams & Wilkins.)

Simmons-Mackie, N., Conklin, J., & Kagan, A. (2008). Think tank deliberates future directions for the social approach to aphasia. Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders, 18, 24-32. doi:10.1044/nnsld18.1.24

Kagan, A. (2020). The Life Participation Approach to Aphasia (LPAA): A twenty-year milestone. Perspectives of the ASHA Special Interest Groups, SIG 2 Neurogenic Communication Disorders. doi:10.1044/2020_PERSP-20-00017


ABOUT A-FROM

Living with Aphasia: Framework for Outcome Measurement (A-FROM)[3] guides the work of the Aphasia Institute in supporting people with aphasia. The A-FROM framework was developed as a simple and practical guide to help clinicians as well as researchers discuss what outcomes may be important to a person with aphasia, in four domains: impairment, participation, environment, and personal (see figure below). It affirms the person with aphasia as the one best able to judge what is or is not a ‘‘meaningful’’ life change.

A-FROM is drawn from the concepts from the World Health Organization’s International Classification for Functioning, Disability and Health (ICF).[4]

Several articles have been written about the A-FROM framework and its application to aphasia programs. Examples include:

Kagan, A. (2011). A-FROM in action at the Aphasia Institute. Seminars in Speech and Language, 32(3), 216-28. doi:10.1055/s-0031-1286176

Kagan, A., Simmons-Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., Threats, T. & Sharp, S. (2008). Counting what counts: A framework for capturing real-life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280. doi:10.1080/02687030701282595

Kagan, A. & Simmons-Mackie, N. (2007). Beginning with the end: Outcome-driven assessment and intervention with life participation in mind. Topics in Language Disorders, 27(4), 309-317. doi:10.1097/01.TLD.0000299885.39488.bf

Simmons-Mackie, N. & Kagan, A. (2007). Application of the ICF in aphasia. Seminars in Speech and Language, 28(4), 244-253. doi:10.1055/s-2007-986521


Focus of our Research

The Aphasia Institute’s research priorities to date have included:

  • Evaluation of our methods
    Example:
    • A clinical trial providing evidence for the method Supported Conversation for Adults with Aphasia (SCATM)
  • Development and evaluation of tools
    Examples:
    • Assessment
    • Conversational skills
    • Quality improvement measures for communicative access
  • Knowledge translation and implementation
    Example:
    • Adapting SCATM for contexts across the continuum of stroke care

For further information, see Selected Publications & Presentations


[1] Reprinted with permission from Life participation approach to aphasia: A statement of values for the future by the LPAA Project Group: R. Chapey, J. F. Duchan, R. J. Elman, L. J. Garcia, A. Kagan, J. Lyon, and N. Simmons Mackie (in alphabetical order). The ASHA Leader, 5(3), 4-6. doi:10.1044/leader.FTR.05032000.4  Copyright 2000 by American Speech-Language-Hearing Association.

[2] Cohen-Schneider, R., Chan, M. T., McCall, D .M., Tedesco, A., & Abramson, A. P. (2020). Spotlight on the Clinician in the Life Participation Approach to Aphasia: Balancing Relationship-Centered Care and Professionalism. Perspectives of the ASHA Special Interest Groups, 5, 414-424. doi:10.1044/2019_PERSP-19-00025

[3] Kagan, A., Simmons-Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., Threats, T., & Sharp, S. (2007). Counting what counts: A framework for capturing real-life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280.

[4] World Health Organisation (WHO). (2001). International classification for functioning, disability and health (ICF). Geneva, Switzerland: World Health Organisation.


"Thank you so much for your accommodation of our presentation and study recruitment efforts! We got much more interest than we ever thought we would, and enough volunteers to keep us busy for a couple of years! ...Thank you for your help with everything! I am really happy to have the Aphasia Institute as a partner in our research. "
- Researcher
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